Help - I've overdone something re methylation and I don't know what

hb8847

Senior Member
Messages
431
Likes
691
Location
United Kingdom
I wonder if there's any way to know for sure whether it is a Herx or gut irritation because that would really help me out. I did a two day fast last week which hopefully would have induced some healing in the gut and then began on the stomach acid straight after and immediately got a reaction, which might suggest a Herx. Who knows.
I'm just thinking perhaps one way of finding out could be by trying 'natural' antimicrobials? I haven't tried these yet but it's in the plan outlined by my doctor, after the antibiotics. In theory these shouldn't really be gut irritants considering they're natural products like oregano oil. If they give me the same sort of reaction to the acid then surely it's all likely to be a Herx reaction rather than gut irritation.
 

Mick

Senior Member
Messages
123
Likes
129
If they give me the same sort of reaction to the acid then surely it's all likely to be a Herx reaction rather than gut irritation.
I like the way you're thinking. I was thinking in the same way (about 5 years ago). But it turned out that oregano oil is so irritating - beyond anything else I tried. The same applies to menthol oil (enteric-coated menthol oil - look that up how it works and what it is because it's something different from normal liquid menthol oil). I burnt my gut so terribly with these two, beyond description. And then, of course, I became allergic to them. So now even oregano spice is a problem.
Grapefruit seed extract has been sitting in the box for the last year, waiting for me to decide if I want to risk it again.

Have you had a stomach gastroscopy? This may show to some degree if you have gut irritation. Even better if you had a capsule endoscopy - which not only shows the stomach but also lower parts of the gut. But the cost is... ridiculous (I wonder if you could give me a number - if you find the price in GB - I'm curious).

So... these are the problems that seem not to have any good solution. It's rather a kind of a vicious circle.
But many people are successfully using antimicrobials like oregano oil...

How would I start dealing with my gut now?

1. Healing my gut. I used Culturelle and vegetable diet (decreases acid production, is not allergenic for me as meat is and it's easily digestible). Glutamine also kind of works (but barely) but it also makes me sleepy and wired at the same time. DGL licorice was good as well as slippery elm for this step, too.
2. Increasing the speed of passage of food. The best here (and the easiest and the cheapest way) is fasting - even intermittent. The first meal after intermittent fasting goes very fast.

I wouldn't use chemical agents that increase the speed of passage. In the long run - they are no good. You get used to them and they stop working.

Then I'd use some foods that increase speed - beets and carrots. They usually work if you can handle fiber.
Then Culturelle also increases speed. Sometimes even too much. In order to make it work, I pour the contents of the capsule out and take like 1/3 of the capsule before the meal.

Sauerkraut used to work for me very well in this respect (and it's very very cheap) but no more - I can't handle this kind of fiber now. Bear in mind that you start with 1/2 - 1 teaspoon daily - you treat it not as a meal but as a medicine...

3. Then I'd try to make the stomach environment more acidic.
Bear in mind that if your passage time is very long, this acid will end up burning your stomach wall, so that's why you have to start with the above steps first. Have you tried Betaine Hcl? This kind of worked for me but in the long run made me sleepy (betaine is a methyl group donor). But the taste of these pills (if you happen to taste them) is just terrible, though you have to live with it, of course.

4. Only after these 3 basic steps are done, I'd go any further. If these 3 steps help or just the opposite. This may include a more aggressive use of antimicrobials/antibiotics/anything.

I hope that you can see that these steps are constructed in this way so as not to make your gut more irritated. And these are very basic things to be done when you start the treatment. However, this guide is not complete. There are many simple and effective things that can be done and these will come to my mind in time, maybe I'll add them here. These things are quite commonly known, the only problem is to find the step where they fit in. Should you use them in the beginning, or only after some other treatment? The order of these steps is crucial here. Unfortunately, there is no simple step-by-step guide that starts from the simplest things. Either people are selling something (so they don't care) or confirm that something more aggressive (like oregano oil) works like a charm - and it makes you think that this has to be it - a miracle cure - so you start using it without thinking it over (been there). Well, it's just great that it works but the problem begins when it doesn't or causes very bad side effects.

Also doctors - gastrologists - are no good in this respect. All the gastrologists (like 3 of them + endoscope operators) that I've been to prescribed me with PPIs. First, they referred me to a gastroscopy which always showed some kind of irritation or gastritis or erosion so it was a simple call for them - PPIs. Even despite the fact that the last time (gastritis) I specifically said that I don't produce stomach acid at all and this irritation is caused by some kind of sensitivity/irritation/allergy. There was no talking to this doctor. Maybe in your area you have a better experience with doctors...
 

BeADocToGoTo1

Senior Member
Messages
535
Likes
896
...However, I'd be delighted if I could find a normal doctor.
Basically doctors here do not deal with CFS or anything like that (may only refer you to a shrink - that's what they do) so I have to go privately. But privately... they use the same patterns of handling patients as they do when seeing patients paid by healthcare system.
...
In Wales Dr. Sarah Myhill is well known but not sure if she is still taking on new patients. Her office may be able to refer you to someone in the UK though.
 

EddieB

Senior Member
Messages
596
Likes
742
Location
Northern southern California
I believe, at least in my case, it’s inflammation/irritation. And an growth/overgrowth of something. But I think there is something more going on.

If you haven’t made a reasonable attempt to improve gut health (diet, supplements, etc) then by all means, give it a go. But for myself, I’ve tried numerous things for years, and made little to no difference. The times I’ve had improvement were just random with no explanation.

I’ve only recently learned about the enterovirus research and treatment. Not that I want enterovirus, but it would explain why I’ve been so sick for so many years, and why all efforts to re build my gut fail. I’m in the process of trying to get tested and rule it out.

Did your ME/CFS start with what felt like a stomach virus? Did your scope/testing only show mild inflammation? Does you ME/CFS fatigue become worse with the gut symptoms? For me, all a yes. Has anyone else tried to rule out enterovirus?
 
Last edited:

Mick

Senior Member
Messages
123
Likes
129
In Wales Dr. Sarah Myhill is well known but not sure if she is still taking on new patients.
From what I know - she doesn't take on new patients. But the problem with these CFS doctors would be of a different nature for me - they require multiple visits and a lot of tests.
So the cost would be exorbitant for me (visits + the cost of trips to get there).
And the diagnosis may still be very very elusive because I basically tried everything (also similar to EddieB above). But there are still things that can be done though extremely difficult to figure out = many many visits.
So it's always a matter of deciding what is best for you - whether you spend all your money now or you keep your money just in case the situation gets even more serious than is now. I chose the latter though I wish I had so much money that I could choose the former.

On the contrary, a visit to neurologist can be a one, two-time visit + electromyography and an answer to one, well-defined question: do I have a disese X or Y. So it might be worth considering but... I already had 3 EMGs and they always said that the symptoms (weakness, cramps) were too weak to grasp. And within the muscles that are usually not tested because they test small muscles in forearm or in finger and my worst symptoms are in legs which work the hardest. And they test the small muscles just because they need muscles that do not work hard and/or are not used to get to an exam room - as this might cause the results to be inaccurate. Simply, there is no protocol for large muscles. But even with such a small intensity of symptoms I get a permanent fatigue/DOMS/PEM because of them.

So, unfortunately, for now I'd rather stick to my logical thinking than to doctors. I've been to a couple of hundreds of them and it's no point... But, boy, how I'd wish there was a point... Among them there was actually *one* doctor worth visiting but there was only so much she could do...

But I kind of digress from the main topic.
 

Mick

Senior Member
Messages
123
Likes
129
I’ve tried numerous things for years, and made little to no difference.
It would be great if you could prepare a list of all of these things, even without an explanation why these should or shouldn't work and if they worked - to make things easier for you. Of course if you don't mind the hard way then you might write an additional word or two.

Why would I want such a list? Because it is so difficult to find a new approach and a new supplement. There are resources out there (like self hacked, linus pauling institute) that describe only single nutrients, not the whole sets of nutrients that might help. And what we actually need is a statistics. If many people could share those lists then we could compare what works most often. And what works ridiculously seldom but the results may be spectacular...

I still believe that I can find the nutrient/drug/whatever I need... though searching for it is going literally painfully slow...
 

Mick

Senior Member
Messages
123
Likes
129
Does you ME/CFS fatigue become worse with the gut symptoms?
I can reply yes only to this question. It was like this: gut problems (pain, allergies) caused tendon, joint and muscle inflammation which became so severe that I started getting DOMS/PEMS. It's a matter of debate if muscle cramps/weakness were caused by this inflammation or are caused by something else.
For ca. 10 years I controlled the symptoms with black cherries (frozen if anyone asked). Polyphenols, I guess. But then I became severely allergic to cherries and no wonder - I ingested even a pound of frozen cherries a day so...

Only recently (a few days ago) have I found that chamomile tea works in a similar fashion albeit much much weaker. But you have to work with what is available, right?

Also, I have restarted MCT oil. It is anti-microbial and most of the time not irritating (though it may facilitate other allergens). But remember - I'm talking not about the coconut oil but about the MCT oil (which is refined from coconut oil or maybe palm kernel oil, who knows).

With MCT oil and not coconut oil:
- all of the fractions C6-C14 are antimicrobial (and anti-candida) what is confirmed by quite a few papers
- all of the fractions are absorbed in a special way, via diffusion, unlike LCT (long-chain triglycerides)
- in theory, all of the fractions can end up as ketones - an additional benefit (in practice only a percent of them)
- MCT oil does not spoil... Especially virgin coconut oil always goes bad.
There are also single fractions commercially available (like C8). Forget them - they are so expensive and MCT oil is so cheap that it's actually cheaper to ingest more MCT oil than these single fractions.
There is however still the matter of diarrhea - there may be a difference there.
AFAIR, MCT oil is considered to be more diarrhea-causing...

So now I take one tablespoon of MCT oil per meal. Spread evenly over the food. If you take it all at once you know what will happen... a toilet incident...

I also take glutamine before meals.
I eat beets (one medium (4 cm in diameter) per meal but not at every meal; especially these meals after fasting do not require beets because the food passage is fast anyway).
And that's about all things that I take when it comes to gut issues.
 

EddieB

Senior Member
Messages
596
Likes
742
Location
Northern southern California
It would be great if you could prepare a list of all of these things, even without an explanation why these should or shouldn't work and if they worked - to make things easier for you.
Here’s a short list...
Acupuncture
Antibiotics
Allergy/food testing
Allergy elimination diet (Dr Nabudripad)
Coffee enemas
Chinese herbs
Food diets/fasts (GAPS,fodmap,etc)
Probiotics/Prebiotics/fermented foods
Reiki
Supplements, pretty much everything commercially available for digestive support
...and probably more I’ll remember later

And unfortunately after many years and thousands of dollars spent, none of these brought any significant improvement. The efforts listed above should have cured a dead horse. This leads me to believe that I’ve yet to discover the real problem.
 

EddieB

Senior Member
Messages
596
Likes
742
Location
Northern southern California
Also, I have restarted MCT oil. It is anti-microbial and most of the time not irritating (though it may facilitate other allergens). But remember - I'm talking not about the coconut oil but about the MCT oil (which is refined from coconut oil or maybe palm kernel oil, who knows).
So you do see benefits from anti microbials?
 

Mick

Senior Member
Messages
123
Likes
129
So you do see benefits from anti microbials?
Sure, they are beneficial for most of us. Or maybe just a few of us. But it's better not to generalize - it's better not to put all of them in one category and state that they are all beneficial. Because that leads to very strange (and wrong) conclusions. OK, sometimes it is helpful to put them in one category but I assume that we are more sophisticated than this. Besides, one thing will work for you, the other - from the same class - will not work for you.

There is this class of anti-microbials that I'd call essential oils or herbs. I tried menthol oil, oregano oil, oregano (whole spice), thyme oil, dill (whole spice), and Iberogast.

Especially Iberogast was good but then I developed an allergy. Same thing with oregano oil though it was not so good. And it was burning (there were problems with dosing - what seems enough or too low proved to be too much and my stomach was burnt). Menthol oil also seemed to work just fine (great for increasing the time of passage) but I developed an allergy. For a long time I also used these herbs (oregano, dill) but developed allergy to oregano (as above). So now I only use dill. It is possible to get used to it and ingest at almost every (other) meal.

Then there is MCT oil - something completely different. Not an essential oil. A different mechanism of action. And it also has some additional benefits (I may also add an increased absorption of nutrients to the list I put above). That's why it's worth considering if essential oils are not working for you. Or despite.

I have a jar of lauriciden/monolarin but haven’t tried it
So try it. But as always, start low, go slow. You can never tell beforehand if something works for you or not.
I used to take it but didn't see any benefit in particular. And for one 8oz jar of lauricidin I can now get 5 liters (almost 1 gallon) of MCT oil (of course in small bottles). It's crazy but I guess MCT oil is slowly becoming a staple food so it gets less and less expensive.

So, for a teaspoon of lauricidin (which is a maximal recommended dose at a meal) I can get 20 teaspoons of MCT oil. And from what I understand (though I may have misread some papers) the antimicrobial concentrations required to kill bacteria are roughly the same. Maybe different bacterial species are killed better by one of them than the other - but who cares about such details?

One thing that you're not gonna like it is that monolaurin is a kind of soap. So you actually ingest soap. But it could always be worse...
 

hb8847

Senior Member
Messages
431
Likes
691
Location
United Kingdom
So I hopefully seem to have figured out my initial problem in this thread.

Glutathione.

I had mentioned this in my original post, and I'd tried taking it a number of times as I'd seen it referred to so frequently. It is in the title of this section of the site. And in particular I'd read on Ben Lynch's Seeking Health site how important Glutathione was in preventing side effects from B12 & Folate:

"As methylfolate supports methylation, cells divide. As cells divide, the amount of glutathione they have reduces by…let’s say 50%. If one is already deficient in glutathione – and many people with MTHFR are deficient in glutathione – then there is going to be a flare of side effects.

Who needs glutathione? Any one living and breathing. If you have any chronic condition, it is likely you are low in glutathione."

I've tried glutathione several times in both powdered and liposomal form but each time I reacted poorly to it, just feeling groggy and pretty awful. This time however I decided to follow Ben Lynch's advice to the letter, specifically:

"If you still feel bad: This may be a sign that you are low in nutrients needed to recycle and utilize your glutathione. I formulated Optimal Liposomal Glutathione Plus for those who do not do well with regular glutathione even after adding molybdenum. This formulation has added selenium which helps you use the glutathione, has added molybdenum to process sulfites, has added riboflavin to recycle the glutathione and PQQ to help reduce damage to your glutathione."
Essentially this time round I made sure to add the other nutrients he mentioned - molybdenum, riboflavin, PQQ, Selenium - and in the quantities specified. And this time it seems to be working, gradually. Cognitively I'm feeling clearer, and I have more energy. I was able to walk to the shops yesterday for the first time in months, my night sweats are reducing, and my depression has lifted slightly.

I am writing this all here mainly in case anyone thinks they're experiencing similar problems I've been having and where glutathione has failed to be the solution - it might just be a lack of the cofactors needed to recycle it properly.

Regarding my situation, it's still early days but I'm hopeful it might get me up to a decent level of health from where I can properly start to address my other gut issues. If anyone has some insight into physically what might be going on with me - as in why I might be lacking in glutathione, and what it's doing that is making my health improve, I'm all ears. Thanks in advance.

Hugo
 

hb8847

Senior Member
Messages
431
Likes
691
Location
United Kingdom
Is this the stuff...
Seeking Health - Optimal Liposomal Glutathione Plus

I’ve tried glutathione and it made me so sick, maybe this would work. Glad it’s helping you!
Yes, although I'm not based in the US so had to buy all the ingredients separately (and not from his company - the liposomal glutathione I've got is from Lipolife on Amazon). I just looked at the ingredients on the back of his "Optimal Liposomal Glutathione Plus" product and bought them all, making sure to have them in roughly the ratios he specifies. Probably easier to just buy his thing though.

He also stresses to take only a few drops to begin with. The dose on the back says 5ml but that's around 120 drops from a pipette so really go slow to begin with is my advice. I've been taking it about 10 days now and I'm on about 10-20 drops once every two days. It seems a very powerful supplement if you're in need of it.
 

EddieB

Senior Member
Messages
596
Likes
742
Location
Northern southern California
I did find that product, but it $60.00 for an 8oz bottle. I’ll have to do some checking to see if individually would be a better bargain. Or maybe it worth it...

edit- just found the Lipolife, $52.00, so that answers that.
 
Last edited:

hb8847

Senior Member
Messages
431
Likes
691
Location
United Kingdom
I did find that product, but it $60.00 for an 8oz bottle. I’ll have to do some checking to see if individually would be a better bargain. Or maybe it worth it...

edit- just found the Lipolife, $52.00, so that answers that.
Yes it seems liposomal glutathione in general isn't cheap. £38 for a 100ml bottle over here. Thing is I'm currently going at a rate of around 1ml every other day so it should last for a while.
 

hb8847

Senior Member
Messages
431
Likes
691
Location
United Kingdom
So I hopefully seem to have figured out my initial problem in this thread.

Glutathione.
So a follow up to this.

I still feel like I'm getting better on the glutathione but it's not without its side effects.

I am now taking around 0.5ml daily and even that makes me feel a bit tired. After eating this worsens to the point where I'm almost having to sleep for a few hours.

Any idea what's happening here?

I had already been feeling very tired after eating even before beginning the glutathione, so I suspect that has something to do with food spurring methylation and my body's subsequent failure to detoxify.

Going forward I'm planning on taking the glutathione on alternate days. In other areas things are improving (my sleep, my vision, cognition, and even my energy except in the immediate hours after taking the glutathione and the first meal of the day) so I'm trying to take this as the most significant indicator of this and not to worry too much about side effects.

A further issue is I had a routine blood test which showed my Serum ATL as over the healthy limit (56, ideally should be under 41).

My doctor confirmed this as 'borderline' and said this wasn't anything serious yet but worth keeping an eye on.

Two days prior to the blood test is when I began taking glutathione at the full 5ml dose which I now know is far too much for my body to handle, so I'm wondering whether that might have skewed the results somewhat.

Alternatively it could maybe be an early sign of liver disease, which could explain why the glutathione has had such a big effect on me.

Regardless I'll be repeating the test next week and then discuss with my doctor.

If anyone though has any insight on how glutathione works in the body and what might be going on here I'd much appreciate it.
 

hb8847

Senior Member
Messages
431
Likes
691
Location
United Kingdom
I did some quick reading, supposedly folic acid can help to lower ATL? Maybe there’s some balancing going on.
Thanks for the reply.

I'd be reluctant to add folate into the mix as I'm already getting what feels like minor symptoms of overmethylating from the glutathione (niacin calms it down pretty effectively so I'm pretty sure it's that). I'm also eating lots of foods high in folate.

I think I'm just not gonna think about that too much until I take the next test after a week of lowering the glutathione and see what the doctor says. But yeh any insight into experiences taking glutathione would be very handy.
 

EddieB

Senior Member
Messages
596
Likes
742
Location
Northern southern California
Sorry I don’t have better answers, I’m learning as I go.

I think I'm just not gonna think about that too much until I take the next test
I would agree. I’ve had test levels high/low return to normal without reason. Currently my iron levels came back into normal, platelets came up, but WBC dropped again. Who knows.

I’m considering trying the Optimal Plus product. If I had to guess, I’d say I’m under methylation. Were you under methylation before the glutathione?